Jan. 10, 2020 -- For Linda Cataldo, it started with a bladder infection and lasted on and off for 15 years. The pain would be excruciating, triggered multiple times a day by something as simple as sitting too long or wearing clothing that chafed. Her condition is called persistent genital arousal disorder, or PGAD, but the “arousal” was more like the feeling of being pursued by a tiger than the pleasure of a sexual encounter. In fact, she avoided sex for years, because it only made her condition worse.
PGAD, in which the person feels repeatedly sexually aroused without provocation, has been considered an extremely rare and embarrassing condition -- one that has been the punchline of jokes even by doctors. But a growing body of research suggests that it is often missed or misdiagnosed. Though vastly more common in women, the condition is considered a version of priapism, where men have persistent and sometimes painful erections, for various reasons.
A study published this week in the journal Pain Reports details the cases of 10 women with PGAD, the treatments they received, and the results. The study includes a small sample, which makes larger conclusions more difficult. Still, in one patient, the symptoms started when she was 11; another was 70, according to the study. All reported multiple daily or near-daily arousals, often triggered by engine vibration, sitting, standing, or using the toilet.
Anne Louise Oaklander, MD, the neurologist who led the research at Massachusetts General Hospital, says PGAD patients -- often linked by internet chat groups like the 400-person one Cataldo co-runs -- are far ahead of the medical community in identifying causes and possible treatments. Many patients diagnose themselves from the internet, which has far more information based on hearsay, not to mention unvetted advice, than medical texts, Oaklander says.
Misunderstood, often misdiagnosed
One thing the study makes clear: People with PGAD get often get questionable medical care. One woman who got symptoms in her 70s received 17 sessions of electroshock therapy during seven psychiatric hospitalizations, on the presumption that she had sexual mania. The treatment had no effect on her PGAD symptoms.
PGAD is a condition that affects the nerves, the study and other research shows, but it can have psychological consequences. Depression is a logical result of the chronic pain, shame, and being misunderstood or laughed at, Oaklander says, noting that all 10 of the women in the study reported new or worse depression and several developed anxiety.
“If people knew about it, and their doctor was able to reassure them, to give them a roadmap, they wouldn’t be so depressed and anxious,” Oaklander says.
Symptoms can vary widely, making it more difficult to diagnose and treat, says Cataldo, a patient advocate who helps run the moderated Facebook group PGAD Support. In her own case, her symptoms mostly consisted of clitoral pain -- “as on the verge of an orgasm as well as the feeling of a bladder infection on steroids,” she says.
Some people report having orgasms every 10 seconds. One woman in the study had two orgasms while she was detailing her condition for an audience of doctors. Others take hours to achieve an orgasm or never reach one, and therefore have no resolution to their arousal. “You can only begin to imagine what this does to a person physically, mentally, and spiritually,” she says.
There is no normal pattern, which “makes it difficult to put definite parameters around the symptoms other than the arousal is unwanted and distressing,” Cataldo says.
Various causes and little relief
The new study confirms that PGAD can be caused by various conditions affecting the nerves carrying sensation from the genitals. Most common in the study groups: Tarlov cysts, growths on the nerve roots near the bottom of the spine, long considered to have no symptoms. Of the 10 women studied, four had Tarlov cysts. For one, removing it ended her PGAD, confirming that pressure on the nerve roots caused her disorder; but another got no relief from surgery. Other conditions that damage lower spinal nerves, from herniated disks to, in the case of one woman, a mild form of spina bifida, can also cause PGAD, according to the study. Vulvodynia, or chronic pain in the vulva, can be caused by the same lesion that causes PGAD, Oaklander says.
PGAD is vastly more common in women, but men can have it, too. It can also be caused by some antidepressants -- either starting a new prescription or abruptly stopping one, the study confirmed.
Other research suggests that PGAD can also be caused by skin infections, irritation in the genital area, or thinning of the skin due to reduced estrogen after menopause, according to Barry Komisaruk, PhD, a distinguished professor of psychology at Rutgers University-Newark, NJ, who studies the condition. Epileptic seizures and scar tissue from a trauma that puts pressure on the spinal nerves or stretches them can also be a cause.
“We don’t really know what the relative proportion of causes is,” he says. “There are many different possible sources, and it’s a question of really doing a careful diagnosis to see what the causes are.”
Unfortunately, many doctors don’t take women’s concerns seriously, Komisaruk says.
“Several women have told us that when they tell their symptoms to their doctor, their doctor says ‘I wish my wife had that problem,’ which makes it even worse, because they’re really tormented by this,” he says.
So it is likely that many people opt to suffer in silence.
Treatments a challenge
And even if they do speak up, getting effective treatment is still a challenge, the new study found.
Self-harm is a major problem among people with PGAD. “We know of six women in the last 4 years who’ve committed suicide,” Komisaruk says. “They can’t get any relief.”
Surgery may treat the problem, if the cause is a Tarlov cyst, but because the cysts are seen as having no symptoms, insurance usually declines payment, he says.
Half of the women in the new study had not completed the recommended diagnostic tests or accepted recommended treatment for their symptoms, which were sometimes very effective. To ease their symptoms, patients tried avoiding triggers, as well as a range of treatments offered by others, including surgery, nerve blocks, sex therapy, steroids, and anesthetics. The source of relief, if any, depended entirely on diagnosing and then treating the specific cause in that person, which included Tarlov cysts and peripheral neuropathy, which is weakness, pain, and other symptoms caused by damage to nerves outside the spinal cord and brain.
All 10 had tried masturbating, but it only brought temporary relief to two of the patients.
Sex brought no relief, either. “Who wants to have sex after you’ve been aroused all day?” says Cataldo, who was not in the new study.
The women in the study avoided sex altogether, and those with partners said they felt their PGAD was a turnoff. “I don’t want to have sex this often. You’re using me,” their partners told them, according to Oaklander.
Most of the women also had bladder issues, either urinating frequently or with urgency, and several also had trouble defecating.
Oaklander says she thinks the condition is more common in women than men, because women are more likely to get Tarlov cysts and also to be prescribed antidepressants. But she also says PGAD is likely the same thing as priapism, a persistent and often painful erection caused by excess blood flow or blood getting trapped in the penis. This can be triggered by blood disorders like sickle cell disease and leukemia, as well as some medications, including antidepressants, anti-anxiety medications, and blood thinners.
Although men can get PGAD and Cataldo says her group has been getting several new male members a month, only a handful of male cases have been reported in medical literature, Oaklander says. Men may be even less likely to report symptoms than women. “The erections are not necessarily painful, but like the women, the men get freaked out and then repelled by the constant up- and down-ing,” she says. “Too much of a good thing is not a good thing, particularly day after day, year after year.”
Oaklander says PGAD, which was identified only in 2001, has largely been ignored by the male-dominated medical establishment because of its connection to genitals and because it mainly affects women.
Komisaruk says he doesn’t have solid proof yet, but he thinks the link with antidepressants may be explained by something in the spinal cord. Changing the balance of serotonin in the spinal cord -- as some antidepressants do -- could, in theory, change the sensitivity to pain, itching, and sensuality, leading to PGAD, he says
Disorder’s name misleading
All three experts say they hope the condition will soon be renamed. Using “arousal” in the name suggests a pleasant experience, which it decidedly is not, Cataldo says.
Oaklander, who says she would like a more specific name that also points to the condition’s roots in nervous system problems, offered “aftodiegersis,” Greek for unprovoked sexual arousal, or “allodiegersis,” for arousal from nonsexual stimuli, such as sitting or clothes, depending on the person’s symptoms.
Cataldo, a retired high school English teacher, says she was extremely lucky to have been able to afford surgery last year to repair a torn disk, which was not covered by insurance. She says she has spent $100,000 on various treatments over the years, depleting her retirement savings. The surgery plus pelvic floor exercises have given her relief “98% of the time,” she says.
The bottom line, Komisaruk says, is that much more research is needed into PGAD, its causes, and potential treatments -- and doctors need to be better educated about it.
“It’s a very early stage of our understanding of how these symptoms work,” he says. “We’re not even in the infancy stage yet -- we’re still in the embryonic stage of understanding.”